My Biggest Fear Realized

Hello, friends. It’s a new month, a new year, and hopefully everything is hunky-dory for you in 2019. But for this blog post, we’re going to go back to November 30, 2018, and I’m going to explain the full story of the mess that has been the last 6 weeks, the mess that a doctor described as “the fiasco.” The short version, for those of you who don’t follow me on Instagram or Twitter, is that I developed 3 infections, was hospitalized for 3 weeks, developed sepsis, had abdominal surgery, and am still recovering. But it is a hell of a story, so I figured I’d return to the blogging world by giving you guys the full scoop of the time that my biggest fear was realized and I came way too close to dying.

Notes: I am not a medical professional. This is a story about my personal experience with these health problems. I also mention gross bodily things and prescription pain medication, so if either of those are not your cup of tea, you might want to skip this post.

Before we move forward, I want to explain a bit about my health for background, especially about being “severely immunosuppressed.” I have rheumatoid arthritis, an autoimmune disease in which my immune system attacks my joints (and more). Because my immune system is the problem, the medications for RA suppress the immune system. And mine has required a ton of suppression. At the time that this all went down, I had the immunosuppressive effects of Rituxan, Arava, Medrol, and more in my system. Rituxan is my main RA treatment, and it is a form of chemotherapy also used to treat non-Hodgkin’s lymphoma, chronic lymphocytic leukemia, and more. Basically, it’s intense. It’s the only treatment I’ve ever responded to, so it’s worth it, but it does come with the price of a compromised immune system. This means that I get sick easily, can get dangerously ill from a simple virus (ahem), and have a hard time fighting illnesses. Which can set me up for a disaster like this one.

Friday, November 30 is when this particular disaster all started. Before I went to work, I had a depo-provera injection, which is my medication for endometriosis. I’ve been on it for a year and a half, one injection every three months, and it has made a huge difference. But, like all medications, it has some side effects. By lunch time, I was having abdominal pain, which has happened to me at previous injections, so I powered through. It got worse as the day went on; it wasn’t so bad that I left work early, but it was bad enough that I took a Lyft home from work instead of the T.

The next day, I was still feeling it, and it was worse. But in the morning, it was okay enough that I even got some blog stuff done. By the afternoon, it was so bad that I was pretty sure I was having a bad reaction to the depo because I’ve had a bad reaction to these medications before; back in 2017, I had a bad reaction to Lupron and was hospitalized for 5 days. The pain continued through the weekend and Monday and increased, and Monday night, my mom pulled the mom card: I was going to my doctor on Tuesday, December 4, and I didn’t have a say in the matter.

So I went to my doctor and told her that I thought I was having a bad reaction. She called GYN and they said they had never seen this reaction to the medication. This begged the question: if I wasn’t reacting to the depo, what was happening? Eventually, my doctor said something along the lines of, “Your case seems too acute to wait. You need to go to the ER.” So to the ER we (my dad and I) went.

The benefit of going to the ER in the morning is that there’s no wait. It still took me a while to be seen, but it was more like 30 minutes instead of 2 hours. So thankfully my overall wait-time wasn’t as bad as it could have been, but the team I saw was struggling to figure out what was happening. They ordered tests and gave me medication to help the pain and fever.

The ultrasound and CT showed concerning things, but not clearly enough to explain what was going on. They showed fluid, but it wasn’t clear how much of it there was, where it was exactly, or where it was coming from. It was mostly a waiting game while my medical team tried to make a game plan. But for those of you who have the good fortune of never being in the ER, everything can take a while, even if things are moving relatively quickly. They also check your vital signs frequently, meaning your temperature, heart rate, blood pressure, and oxygen levels. So we knew that over the course of the hours that I was in the ER, my temperature was growing. When it reached 103 – a terrifying temperature if you’re unable to fight illnesses properly – the nurses and doctors decided things needed to change. I was moved to the “urgent” department of the ER because it was emptier and there were fewer people who had contagious things I could catch.

I’m not going to lie – things get blurry after that due to fever and pain and anxiety medications. But eventually I was admitted. Given that the pain was in my lower belly/upper pelvis and I have endometriosis, they put me in the gynecology floor. They tried to figure out what was going on and the only way to really do that was through procedures.

Disclaimer: I was on a lot of medication and do not remember the exact order of the next few events. I remember what happened, just not the order.

We thought there might be some bleeding in my GI tract, so I had an endoscopy. That’s a pretty easy procedure as you’re asleep for it without doing general anesthesia and the only prep is to stop eating and drinking. (We did, though, learn that I become the thirsty version of hangry when I’m not allowed fluids. What can I say? I love water.) This found that I have several near-ulcers that were “oozing.” As such, I’ve had to stop taking naproxen, which probably caused the near-ulcers as I’ve been on it constantly for 8+ years. But the near-ulcers didn’t explain why I had such terrible abdominal pain.

I’m pretty sure that this is the point when I was moved from the GYN floor to the medicine/oncology floor. As far as I can tell, the medicine team is a bit of an overreaching team for cases like mine that involve multiple bodily systems. But I later found out that the reason I was moved to this floor and that room is it was a slight step down from the ICU. The ICU was across the hall, but given my immunosuppression, they weren’t sure I’d be safe. The last thing we needed was for me to get sicker when I was trying to get better. So instead they put me in the room in front of the nurse’s station so I would be monitored extra closely.

I hope that this also further explains the extent to which immunosuppression affects “regular” illness. They weren’t sure that I would be safe in the ICU.

When it came down to it, no one knew what was going on with me and I was getting sicker. The only thing we kind of knew was that I had an infection, as I still dealt with that fever. It thankfully stayed a bit lower than 103, but it was too close for comfort. By now, we had exhausted any alternatives: it was time for surgery so we could figure out the mystery. One option was extremely invasive and involved an incision going straight up my stomach and opening me wide up to fix whatever was wrong. OBVIOUSLY I didn’t want to do that. The other option – which we ended up going with – I was much more comfortable with. It was a laparoscopic surgery: they would put a camera inside to see what was going on and repair from there. At this point, we still thought that my reproductive system might be involved somehow because imaging showed fluid gathered toward that system. The surgical team actually went into surgery preparing me to lose a fallopian tube or an ovary. After a week of confusion and pain and stress, though, I honestly didn’t give an eff about that.

Well, when they actually put the camera in on December 12, we were all in for a shock: my abdominal cavity was filled with pus. They couldn’t even see the fallopian tube or ovary in question, that’s how much pus there was. So they “hosed out” my insides – that is the honest-to-goodness phrase doctors used – and put in a drain for any more pus that was created by the infection. A drain is mostly what it sounds like; because there would be pus in my abdominal cavity as long as the infection causing it was still around, they put a tube in (going through my skin) to drain the fluid outside of my body. Fun!

So now we knew for sure that I had an infection, even if we didn’t know exactly where it was coming from. Thankfully, the surgery really helped the abdominal pain, and ever since December 12 my abdominal pain has been located to the incisions and not my entire belly. But since we only knew a little bit more than before, we starting throwing antibiotics at a wall and hoping they would stick. I have no idea how many antibiotics I tried in that week, and that’s more because I tried so many than because of the pain medication. (Note: I’m much clearer on the order of events from here on out.) By now, my doctors had sent off samples from the surgery for testing, in addition to the other various samples they had taken from me over the previous week. Again, we knew there was an infection, but we didn’t know where or what.

In fact, my doctors actually told me that we will probably never know how all of this happened. We’ll never know how I got sick. We’ll never know where in my body it all started. It’s part of the immunosuppressed life; I could have passed someone on the street who had a minor version of what I have and caught it from them. It’s hard to believe that in 2018 and 2019 we still don’t know so much about the human body, but as any chronically ill person can tell you, there’s loads for us to learn. But anyway. Back to the fiasco.

The set-up of my medications that I do every day now that I’m home.

Almost a week later, the week of December 17, we did finally find out what infections I have. Yup, infections with an s. It was determined (somehow) that my kidney infection was the first one, and then it caused my other two infections, both of which are also in the renal system. You might be asking yourself how this all ties into pus in my abdominal cavity. The theory is that all the infections created pus because, well, infections. But this is also where another fun diagnosis comes into play: sepsis.

Sepsis is “a potentially life-threatening condition caused by the body’s response to an infection. The body normally releases chemicals into the bloodstream to fight an infection. Sepsis occurs when the body’s response to these chemicals is out of balance, triggering changes that can damage multiple organ systems.” (x) Once again, my immune system does not work properly. So when it tried to fight these infections, it went to the level of sepsis.

The problem is that sepsis itself can be life-threatening on its own, but if sepsis becomes septic shock, it becomes life-threatening. So in addition to 3 infections that were driving up my temperature to frightening levels, I was living with another condition that brought me too close to death. All while my immune system is nearly unable to fight them all.

But thankfully, with the more specific diagnoses, we found an antibiotic combination that worked, and I started feeling better within 24 hours. The drain worked well, my temperature started getting lower, my white blood count started decreasing, and I started eating more.

This was especially good because we were nearing Christmas and I desperately wanted to be home for that. As we got to the weekend before Christmas, I was doing significantly better, so I told my extensive medical team – I SAW SO MANY DOCTORS – that I wanted to be discharged by 8 PM on Christmas Eve. Luckily, my body cooperated with that, and I was home by dinner on Christmas Eve.

Obviously, they did not discharge me lightly. They took out one drain before I left, but also put in another one for the other side of my abdominal cavity, which is still in. (Hopefully coming out on Thursday.) I also got a PICC line put in so I could get blood work done much easier – and so I could get infusions of antibiotics 4 times a day and give myself antibiotics through the line, all at home. This cocktail was topped off by oral anti-fungals.

I know this is blurry, but this was taken yesterday. I’ve lost over 20 pounds. I’m still hooked up to my abdominal drain. I have to carry an infusion pump with me everywhere. I have to use my cane inside my house. I can’t wear regular pants yet due to the locations of my incisions and drain. Basically, I have a long way to go.

Additionally, I was given the order to rest lots and to avoid BLT: bending, lifting, and twisting. Stairs were a no-go until last week, and I’m currently doing 1 flight 1 time a day. I’m hoping to start doing a couple hours of work for my “real” job this week. I’m doing physical therapy exercises at home. So it might take a while, but eventually, I’ll heal. My physical therapist told me that given all of my infections and my other health issues, it will take 2 to 3 times longer for me to heal from this than an otherwise healthy person would. Which is just how the immunosuppressed life goes.

That brings us to today. I’m doing so much better than I was 5.5 weeks ago when this all started. But I have a long, long way to go due to the immunosuppression. I’m off most of those meds for now, but the immunosuppression effects of Rituxan can remain in the body for up to 12 months. I’ve got an uphill battle ahead of me.

I have desperately thanked God for the fact that this happened when the Rituxan wasn’t at its strongest; that’s one factor that saved my life. I’ve also thanked Him for the fact that my mother intervened when she did; if she waited 24 hours, I might be here, but I’d probably still be in the hospital. I’ve thanked Him that my doctors and nurses were as concerned as we were about everything and that they investigated as intently as they did. If anything had gone slightly differently, my world today would be very, very different.

I’ve lived in fear of a situation like this for the last 8.5 years. When I was diagnosed and first put on immunosuppressants in July 2010, my rheumatologist sat me down and gave me a speech I’ll never forget: “If you get a cold, you will get bronchitis. If you get bronchitis, you will get pneumonia. If you get pneumonia, you will die.” This sounds really intense, but to be completely honest, I wasn’t taking him or his warnings seriously. And then I kept getting bronchitis and strep throat and I realized that there might be something to what he said. As an anxious person, I started worrying about a situation just like this one because I realized just how possible it was.

So here we are in 2019. I’m healing from The Fiasco, as I’m calling it, and I’m ready to put it way in the rearview. 2018 ended up having 2 surgeries, so I think I’m exempt in 2019. Hopefully The Fiasco is a situation that I will never deal with every again, although the reality is that because I’m 27 and hopefully have another 50 years ahead of me, I’ll probably experience things like this several more times in my lifetime.

But I’m definitely going to be way more intense about germs moving forward. Wash your hands. Cover your mouth. Stay home if you’re sick. Get your flu shot. And stay the hell away from people with suppressed immune systems if you’re sick.

[…] fiction novel about her, I bought it immediately. It took me a while to finish it because of The Fiasco, but it’s so good. I disagree a little with the choices Weir made as a historian and a writer […]